"it sounds awful but at least we had some control over it"
If you and the doctors have decided not to stop life support treatment, then there probably won't be any changes in your child's treatment initially. Hopefully, your child will respond to treatment and show signs of improvement. If that doesn't happen, the doctors and nurses may talk with you again about life support, and whether it is helping your child.
What happens next depends very much on your situation.
If your child is fading rapidly you may not have much time. Talk to the doctors and nurses about what is important to you and your family. Have a think about how to make the short time that your child has left as good as possible for them and for you.
If your child has more time, particularly if they are older, you may have a chance to do some things that are important to them. This can mean that you get out of the hospital, perhaps to go home, or to a place that specialises in caring for children who are dying like a hospice. For example some families want to take their child out into the fresh air, into a garden, or to a beach, to give them a chance, even just once, of experiencing those things. Talk to the doctors about whether you can go home with your child if that is important to you. Palliative care teams can often help with this.
For some parents, this is a time to invite other people to come and see the child and to have a chance to say goodbye. That might include siblings or grandparents, close friends, or other family members. If there are ceremonies that are important within your culture or religion talk to the doctors about this. For example, it might be important to you to organise a blessing or baptism or naming ceremony while your child is still alive.
For other parents, this is a very precious time that they want to spend with their child, without having to deal with other people. That is OK. You don't have to bring other family members in if you don't want to. You may choose to create some special memories, for example, by having photos taken.
If your child is comfortable, the doctors may not need to stop treatment right away. Keeping the treatment going for a little longer can allow other people to get to see the child, or allow you to do things that are important to you. It is also important not to keep treatment going for too long if it isn't helpful. Talk with your child's doctors about when would be the best time to stop treatment.
If they haven't previously been involved, now may be a time to involve palliative care specialists in the care of your child. They are experts in helping families at this time.
You may have decided to stop some life support treatments, but to continue others. That is OK. As time passes, the situation could change. Your child's doctors may talk with you again about whether to still continue those life support treatments.
If your child is currently on a ventilator (breathing machine), you may have decided with doctors to remove the breathing tube. This allows the child to breathe by themselves if they are able to. You can be with your child when their breathing tube is removed if you would like to be.
After a breathing tube is removed your child could die within a few minutes, or it may take some time. That depends on how sick your child is, and how much help they are needing from the ventilator.
Doctors can give you an idea about what they expect will happen.
It is common for children to breathe on their own for a while after the breathing tube is taken out. Some parents would like to be with their child when the breathing tube is removed. Others prefer not to be.
Doctors will give your child medicine so that they don't feel distressed or uncomfortable with their breathing. At any stage, if you feel that your child is uncomfortable, let the doctors know, and they can give your child more medicine.
As death approaches, children's breathing can become slow and irregular. Their lips may become blue or purple. They may have episodes of stopping breathing, followed by episodes of faster breathing. Later they may have deep 'gasping' breathing. These reflex breaths can look and sound scary, but doctors do not think that these mean that the child is feeling pain or discomfort. Usually they are a sign that the body is shutting down. If you are worried that your child is in pain, speak to the doctors and nurses about it.
Many parents appreciate the chance to be close to their child and hold them or cuddle them at this time. Others find that too difficult, and something that they cannot do. Talk to the doctors and nurses about what you would like for your child.
Morphine is a very effective medicine for pain. When it is given carefully to children who are dying it does not stop their breathing.
Morphine is often given to children who are dying and who are in pain. They are given enough morphine to treat their pain, and the amount of medicine is adjusted, depending on how they respond. Research studies of patients who are dying show that giving morphine in this way does not make their death happen sooner.
Doctors often cannot say for sure how long a child will live for. The important thing is that the child is comfortable, and that they and their family get the support they need.
It is often not possible to know how long a child will continue to live. Sometimes it is a short time, sometimes longer. That uncertainty can be hard for families to deal with. One approach that sometimes helps is to try to focus on the present, on making the most of the time that you have with your child. When you do not know what tomorrow will bring, focus on this day, this hour, or this minute rather than worrying about the next.
Families can find themselves torn by conflicting emotions. One part of them wants to hold on to the child for as long as possible. Another part wants the child's suffering (and their own suffering) to end. Both of these emotions are natural and understandable. There is no easy way to resolve this conflict. Sometimes it helps to acknowledge the two different emotions inside you, and to know that others feel this way as well.
The longer that it takes, the harder parents can sometimes find it to deal with. If you are finding this difficult, speak to the doctors and nurses looking after your child. Palliative care teams are used to helping families with this difficult time.
Occasionally children live for a long time after their families have reached decisions to stop life support. When that happens, sometimes families worry whether they made the right decision. But the fact that the child is still alive doesn't mean that parents have made the wrong decision. It can be an opportunity to do things with the child that are important to the child and family.
The aim of stopping life support treatment and the aim of comfort care is not that the child dies, rather it is that they are comfortable and not in pain.
Speak to your child's doctors and nurses if you would like more information about the possibility of organ donation. You can also find further information here.
The doctors and nurses looking after your child can help you with this. You can also find further information here.